The Irish Hospice Foundation Striving for the best care at end of life for all
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Name of residential care centre
Our vision for how we deliver end-of-life care Please use the space below to record the values that you, and your organisation, wish to honour and promote for people at the end of life. You may wish to consult with staff and residents to explore what excellent end-of-life care means for your residential care centre.
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foreword The Irish Hospice Foundation (IHF) believes that no one should face death or bereavement without the care and support that they need. Each year in Ireland, approximately 7,500 people die in a longterm care setting, accounting for 25% of total deaths in this country. Therefore, staff working in residential care centres have a key role to play in ensuring residents receive compassionate, person-centred end-of-life care. In order to support staff in this role, the IHF have developed ‘A Journey of Change’, a programme designed to give staff the knowledge, skills and confidence to deliver excellent end-of-life care. One of the key components of ‘A Journey of Change’ is this End-of-Life Care Toolkit. The purpose of the toolkit is to bring together all the information you need to develop holistic end-of-life care practices in your residential care centre. Every staff member in your residential care centre plays a crucial role in ensuring that every resident receives excellent end-of-life care. Therefore the information in this toolkit is relevant to all staff; management, nursing, medical, healthcare assistants, housekeeping, catering, allied healthcare professionals, activity coordinators, porters, gardeners and volunteers. We hope the information and resources in this toolkit will support you to recognise the crucial role all staff play in end-of-life care, and enable you to be sensitive and responsive to the individual end-of-life care needs of each resident. The content of the toolkit was informed and guided by emerging literature and best practice, as well as feedback from residential care staff who have participated on our training programmes over the past few years. Each
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section of this toolkit looks at a particular aspect of end-of-life care. The sections can be used as stand-alone pieces to support reflection, development and staff education. However, each section is only part of the whole. Taken together they will enable you to provide coherent bestquality support for each resident, and for their families, at each stage of their journey from the time of admission to the end of life. For the purpose of this document we have used the term ‘end-of-life care’ throughout. We use this term in the broadest sense, referring to all aspects of care relating to supporting a person with a life limiting condition to live well to the end of their life, care of the dying, care after death and bereavement. I would like to thank all those who contributed to this toolkit and particularly recognise the contribution from the IHF Journey of Change team – Anna de Siún, Hilary Smyth, Mary Lovegrove, Aoife O’Neill, Jacinta Kelly and Emer Meighan. I trust this toolkit will assist you as you strive to deliver better end-of-life care in your residential care centre. This is the first version of the end-oflife care toolkit, which will be continually updated to reflect emerging evidence based practice and to meet your information and resource needs. I would like to take this opportunity to invite you to give us your feedback, ensuring this resource develops in line with your needs.
Sharon Foley CEO Irish Hospice Foundation
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FOR THE DYING May death come gently towards you, Leaving you time to make your way Through the cold embrace of fear To the place of inner tranquillity. May death arrive only after a long life To find you at home among your own With every comfort and care you require. May your leave-taking be gracious, Enabling you to hold dignity Through awkwardness and illness. May you see the reflection Of your life’s kindness and beauty In all the tears that fall for you. Extract from John O’Donohue, Benedictus
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contents 1. Excellence in End-of-Life Care 1) Person-centred end-of-life care 2) How to get the best from the End-of-Life Care Toolkit
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2. End-of-Life Care Policies, Procedures and Guidelines How will you care for me? 1) Defining policies, procedures and guidelines 2) Developing an end-of-life care policy 3) Developing end-of-life care procedures and guidelines 4) Implementing end-of-life care policies, procedures and guidelines 5) Reviewing end-of-life care policies, procedures and guidelines
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3. On Admission to Residential Care Supporting me to make this move 1) Supporting new residents and their families through this time of transition 2) Preparing for the move to residential care 3) When to talk about end-of-life care
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4. Communication in End-of-Life Care Connect with me 1) Essential skills for good communication 2) Communicating with a person who has dementia 3) Having conversations about end-of-life care 4) Delivering bad news
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5. Assessment, Care Planning and Advance Care Planning Knowing who I am, knowing what I want 1) Defining assessment, care planning and advance care planning 2) Assessing end-of-life care needs 3) End-of-life care plans 4) Advance care planning 5) Capacity 6) Advance healthcare directives
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6. Supporting Families Supporting my family also supports me 1) Key points to remember when supporting families 2) Communicating with families 3) Involving families in a resident’s care 4) Supporting families whose loved one is nearing the end of life 5) Dealing with family conflict 6) Family meetings
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contents 7. Recognising When a Person is Dying I’m not getting any better am I? 1) When is a person ‘approaching end of life’ 2) The importance of recognising when end of life may be approaching 3) Recognising dying
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8. Caring in the Last Days of Life Walking together to the end 1) Caring for a person who is dying 2) Person-centred care at the end of life 3) The process of dying 4) Psychosocial care in the last days of life 5) Spiritual care in the last days of life 6) Control of physical symptoms in the last days of life 7) A difficult death 8) Difficult questions
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9. Care after a Person’s Death Caring for me after I’ve gone 1) An overview of last offices 2) Preparation for last offices 3) Carrying out last offices 4) Self-care: How might I feel during last offices? 5) Transfer of a deceased person from their place of death
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10. Supporting Staff Looking after ourselves, looking after each other 1) Identifying stress, burnout and compassion fatigue 2) Self-care 3) The caring team 4) A caring organisation 5) Grief at work
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11. Design and Dignity The place where I live, the place I will die 1) Understanding the physical environment 2) Practicalities 3) Finishes, fixtures and fittings 4) Outside spaces and sensory gardens 5) Family rooms
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12. Irish Hospice Foundation End-of-Life Resources and Training Programmes Providing me with the best possible end-of-life care 1) Ceremonial resources for the end of life 2) Guidelines on the appropriate use of the IHF end-of-life spiral symbol 3) IHF staff development, education and training courses
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1. Excellence in End-of-Life Care 1. Person-centred end-of-life care We all hope that we will be given the best, most compassionate care as we near the end of our lives. For the Irish Hospice Foundation (IHF), good end-of-life care means that you will always be listened to and respected and you will be supported to live well until the end of your life. That you will have a choice in the type of care you are given and the people caring for you will recognise and cherish your unique qualities and characteristics As death approaches, you will be supported to prepare yourself for what lies ahead and your care will give you dignity and comfort. It also means that your family and loved ones will be well cared for after your death. Excellent end-of-life care is person-centred. It is built around the needs of the individual, with the resident always at the heart of every decision. It is a holistic approach to care that responds to the person’s physical, social, spiritual and psychological needs. Each year in Ireland, approximately 7,500 people die in a long-term care setting1. Every staff member in every residential care centre plays a crucial role in ensuring that every resident receives excellent end-of-life care. Your job is not an easy one. Caring for someone who is nearing the end of life can be extremely rewarding, but you may also find it challenging.
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The IHF have produced this toolkit to give you the information and resources you need to develop holistic end-of-life care practices in your residential care centre. Each section looks at a particular aspect of end-of-life care. The sections can be used as stand-alone pieces to support reflection, development and staff education. However, each section is only part of the whole. Taken together they will enable you to provide coherent best-quality support for each resident, and for their families, from the time of admission to the end of life. The information in this toolkit applies to all residents, regardless of their condition. Person-centred end-of-life care emphasises knowing the person, who they are and what their wishes are. This is the same for all residents, whether or not they have a cognitive impairment. Where additional information can help you to support a person living with a dementia, that information is included in the relevant section. A person-centred ethos of care underpins all the information in the IHF End-of-Life Toolkit. Person-centred care involves taking the time to get to know each person living in your residential care centre, and giving them a chance to know you. Understanding their fears and anxieties, listening to their wishes and dreams, and finding out about the things that bring them comfort and joy, will allow you to care for each person in a way that is right for them. This relationship will support you if you need to have difficult conversations with residents, such as talking with them about their wishes for their future care, finding out how much they would like to know if their health begins to decline, or asking them what arrangements they would like to make for after their death. In this way end-of-life care and general person-centred care are intertwined.
Person-centred language You will notice that the language used in this toolkit strives to be as person-centred as possible, both for you the reader, and the people being referred to. The language that you use reflects how you see the people around you. In residential care centres, the language you use when talking with residents or chatting with colleagues, shapes how people are seen and cared for. Try to be aware of, and avoid, demeaning language with can be distressing to adults receiving care. For example, as people get older they may need assistance with their meals, not ‘feeding’. Terms of endearment such as ‘pet’, ‘love’ or ‘darling’ may also be unintentionally disrespectful to the person2.
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2. How to get the best from the End-of-Life Care Toolkit The work of every staff member in your residential care centre impacts on residents and their families. This means that everyone has a role to play in how residents experience their end-of-life care. The IHF Endof-Life Toolkit is intended to be a support for all staff: management, nursing staff, healthcare assistants, housekeeping staff, catering staff, allied healthcare professionals, activities co-ordinators, therapists, porters, gardeners and volunteers. However, it is important to acknowledge that some staff may have difficulty responding to the needs of residents who are nearing the end of their lives, particularly if they are new to this area, have limited experience of caring for the dying, or have themselves been recently bereaved. The information in this toolkit aims to support you to deliver excellent end-of-life care to every person living in your residential care centre. It does not cover all eventualities, or address every decision you will find yourself being asked to make. In any case, excellent end-of-life care cannot be reduced to a set of best practice guidelines or checklists. Learning from best practice must always be applied with understanding and compassion. How an assessment is carried out, rather than the outcome measure, is often what provides the most valuable learning and insight, both for the person carrying out the assessment and the person being assessed.
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while the IHF End-of-Life Toolkit advocates best practice in many aspects of end-of-life care, it is how you choose to implement these best practice tools and resources that will have the most impact on the person being cared for.
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So, while the IHF End-of-Life Care Toolkit advocates best practice in many aspects of end-of-life care, it is how you choose to implement these best practice tools and resources that will have the most impact on the person being cared for. We have therefore attempted to capture both the practicalities and the heart of endof-life care in each section. Much of the information has been adapted from other best practice sources, and we have made every effort to identify and reference these sources and attribute authorship correctly. The end-of-life care toolkit was not designed to be read from start to finish as one single document. In order to get the best from the toolkit we would suggest you choose one section at a time to read and study. There are a number of approaches you may wish to adopt to get the best from your end-of-life care toolkit: You may wish to go through each of the sections in the • order they have been written, following the journey of the person from the time they are admitted to the time of their death. •
You may wish to study sections that focus on areas that are a priority for you, or your residential care centre, at the moment.
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You may wish to use each section as an educational support during in-house staff training sessions on end-of-life care.
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You may wish to start a study group and use different sections as a learning tool, or discussion point, when you meet.
A toolkit like this one can never be complete. It is a work in progress, which will change and expand as more evidence-based best practice in end-of-life becomes available. We are keen to hear from you, to tell us what you think of the toolkit and to advise us of any aspects of endof-life care you would like to see included in the future. You can contact us directly by e-mail to ajourneyofchange@hospicefoundation.ie. The IHF will update the toolkit in response to feedback we receive from you and with new developments in best practice both in Ireland and abroad. We recommend that you assign responsibility for updating the toolkit to one member of staff. You will receive all updates directly from the IHF. To cite this toolkit please reference as follows: Irish Hospice Foundation. The End-of-Life Care Toolkit for Staff working in Residential Care Centres for Older People. Dublin: The Irish Hospice Foundation; 2015. Section 1 Page 4
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The IHF End-of-Life Toolkit was developed as part of A Journey of Change, a programme which aims to support public, private and voluntary residential care centres to develop their end-of-life care. We encourage all residential care centres allied to A Journey of Change to establish a multidisciplinary Compassionate End-of-Life (CEOL) group, with responsibility for developing end-of-life care in your residential care centre. CEOL groups can use the IHF End-of-Life Toolkit as a resource to help to identify areas for development, educate staff and establish end-of-life care practices that provide best quality holistic support to each person living in the residential care centre.
Every staff member in every residential care centre plays a crucial role in ensuring that every resident receives excellent end-of-life care.
Achieving excellence in end-of-life care is not a destination. It is a journey that will ask you to continually reflect on, challenge and develop what you know about end-of-life care and the type of care you provide. We wish you every success on your journey, and hope that this toolkit will be a useful and valuable resource to you along the way.
references 1.
2.
McKeown K. Key performance indicators for end-of-life care: A review of data on place of care and place of death in Ireland. Dublin: Irish Hospice Foundation; 2012. Health Service Executive, Office of the Nursing and Midwifery Services Director, University of Ulster. Enhancing care for older people: A guide to practice development processes to support and enhance care in residential settings for older people. Dublin: HSE; 2010.
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